Document Type : Original Article
Authors
- Maryam saberivand 1
- Aida Malek Mahdavi 2
- Sousan Kolahi 3
- Peyman Rezaei Hachesu 4
- Rojin Farzaneh 1
- Arezou Ghassembaglou 3
- Mehdi Jafarpour 3
- Dara Rahmanpour 3
- Raha Khabbazi 3
- Alireza khabbazi 1
1 Connective Tissue Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
2 Tuberculosis and Lung Disease Research Center, Tabriz University of Medical Sciences, Tabriz, Iran.
3 Connective Tissue Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran.
4 Department of Health Information Technology , Tabriz University of Medical Sciences, Tabriz, Iran
Abstract
This manuscript describes the establishment and initial results of a patient-driven registry in Tabriz, Iran to collect demographic, clinical, and paraclinical data, treatment and outcomes of patients with vasculitis. The Tabriz University of Medical Sciences Vasculitis Registry (TUOMS-VR), a patient-driven, prospective and web-based disease registry system, is conducted at the Connective Tissue Diseases Research Center, TUOMS located in Tabriz, Iran. The primary objective of this registry is to comprehensively document prospective data of patients diagnosed with systemic or single-organ vasculitis according to the Chapel Hill Consensus Conference nomenclature and definitions. To date, the registry has successfully enrolled 743 patients. The gender distribution within this existing cohort is balanced, with 50.5% male and 49.5% female participants. The most frequently diagnosed condition was Behcet’s disease, representing 56.5% of cases. Polymyalgia rheumatica also emerged as a notable diagnosis, accounting for 13.7% of cases. By providing a comprehensive and prospective documentation of vasculitis cases, the TUOMS-VR aims to enhance vasculitis patients care and outcomes.
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